Together We're Stronger

Supporting families affected by Robinow Syndrome through community, resources, and research

500+

Families Supported

20+

Years of Service

15+

Research Studies

Understanding Robinow Syndrome

Robinow Syndrome is a rare genetic disorder characterized by distinctive facial features, short stature, and skeletal abnormalities. Often called "fetal face syndrome," it affects approximately 1 in 500,000 births worldwide.

Our foundation serves as a beacon of hope and support for families navigating this journey, providing essential resources, fostering community connections, and funding crucial research to improve outcomes and quality of life.

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Key Characteristics

  • Distinctive facial features with widely spaced eyes
  • Short stature and limb defects
  • Spinal abnormalities and rib fusion
  • Genital abnormalities in males

Comprehensive Family Support

We understand that every family's journey with Robinow Syndrome is unique. Our comprehensive support system is designed to meet you wherever you are in your journey.

Email Support

Connect with our support team and other families who understand your experience. We respond to all inquiries within 24 hours.

support@robinow.org

Family Connect Network

Join our secure online community where families share experiences, advice, and celebrate milestones together.

Join Network →

Educational Workshops

Monthly webinars covering medical care, educational advocacy, and practical daily living strategies.

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Bi-Annual Family Conventions

Our signature events bring families together for learning, connection, and celebration. These weekend gatherings are the heart of our community.

Next Convention: Summer 2025

Join us in Denver, Colorado for three days of workshops, medical sessions, and family activities.

Medical Expert Sessions

Connect directly with leading specialists and researchers in genetics, orthopedics, and developmental pediatrics.

Family Activities

Age-appropriate activities for siblings and family members, creating lasting memories and friendships.

Convention Registration

Comprehensive Resource Library

Access our extensive collection of medical guides, educational materials, and practical resources curated by medical experts and experienced families.

Medical Guides

Comprehensive medical information and care guidelines reviewed by specialists.

Browse Guides

Educational Support

Tools and advocacy resources for navigating special education services.

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Latest Research

Stay updated with the latest scientific advances and clinical trials.

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Family Stories

Inspiring stories and practical tips from families in our community.

Read Stories
RECENTLY UPDATED

Complete Care Guide for Robinow Syndrome

Our comprehensive 80-page guide covers everything from initial diagnosis to adult care, including growth charts, surgical considerations, and quality of life recommendations. Developed in collaboration with leading medical specialists.

Medical Care Growth Management Surgical Guidelines

PDF • 2.1 MB • Updated Dec 2024

Advancing Research & Discovery

We fund groundbreaking research to better understand Robinow Syndrome and develop new treatments that improve quality of life for affected individuals and families.

Current Research Initiatives

Genetic Mapping Project

Comprehensive analysis of genetic variants to improve diagnostic accuracy and understand phenotypic diversity across different populations.

Growth Hormone Study

Multi-center clinical trial investigating the efficacy and safety of growth hormone therapy in children with Robinow Syndrome.

Quality of Life Assessment

Longitudinal study examining physical, emotional, and social outcomes to inform comprehensive care strategies.

Research Impact

$2.1M
Research Funding
45+
Published Papers
12
Active Studies
300+
Participants

Research Partners

Johns Hopkins University
Mayo Clinic
Children's Hospital of Philadelphia
University of Washington

Get in Touch

Whether you're newly diagnosed, need support, or want to get involved, we're here to help connect you with the resources you need.

Email Support

Get personalized guidance and connect with our community

support@robinow.org

Family Network

Join our secure community of families and advocates

Join Family Network

Foundation Office

123 Medical Center Drive
Suite 456
Research Triangle, NC 27709

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